Kassidy Briana Johnstonĺs Story of Anencephaly

On April 7, 2012, my husband and I were overjoyed to find out we were pregnant! We had lost a baby
to a miscarriage on December 22, 2011 and we were hoping this pregnancy would result in a healthy full
term baby to take home.

On June 5, 2012, my husband and I went to my OBGYN for my scheduled 12 week appointment. When they couldn't
find my baby's heartbeat on the Doppler, I was sent in for an unscheduled ultrasound. Luckily, the technician
found a heartbeat. I was so relieved I could cry!

The technician paused and then said, "It appears your baby has an omphalocele. Do you know what that is?"
I answered no. She continued to explain that our baby's organs were growing on the outside of its body.
I wept and asked if it was fatal. She said not typically, but that I would need to talk to the doctor because
the head looked abnormal too.

We were referred to a specialist. The appointment was set for three days later. I was so nervous I couldn't eat
or sleep. I researched omphaloceles and the surgeries that could correct it. I prayed for God to protect our
baby.

On June 8th, we saw that specialist. The hour long ultrasound seemed much longer, as well as the hour long wait
in the examination room thereafter. How could they keep us waiting like this? My husband paced the room and
I sat in a gown convincing myself everything was okay. The doctor entered and said that our baby's omphalocele
was severe, and that the hemorrhage of organs was close to the size of baby itself. I looked at her in complete
shock. She continued, "ůbut that is the least of your worries."

She said our baby had anencephaly. Our baby would not survive, and would likely miscarry or be stillborn.
I didn't even know what to ask, what to say. This couldn't be happening. I had never even heard of anencephaly before.

We immediately chose to carry. Termination wasn't an option. We were believers that God had blessed us with this
baby and that we would love her until natural death.

The next few weeks were hard. I was scared for people to ask about it, as I got mixed reactions when I told
others I was carrying anyways. I was surprised to get responses such as "why would you do that yourself?"

When I was just shy of 16 weeks, we found out we were having a daughter! My sweet little girl, I had prayed
for her and God had given her to me. We decided to name her Kassidy Briana.

I got in the bad habit of counting down though. I was due December 18, 2012 and I would think "okay, I may only
have 24 more weeks with her." One doctor I saw had predicted I would lose her before week 28. I was scared, not
only to say goodbye to her, but for childbirth in general. Kassidy's omphalocele was still large, and the topic
of a c-section was always brought up in my doctor's appointments. I wanted to avoid a c-section so that I had
a better recovery and could deliver future children naturally. A lot of anencephaly moms opt for c-section to
increase chance that the baby may survive birth. I very much prayed about this and lifted this up to the Lord.
If it be HIS will for me to have a c-section, it will happen that way.

I read a lot of blogs by anencephaly mothers and got comfort knowing I wasn't alone.

Around week 30, I also found out that Kassidy only had two chambers in her heartůa heart defect. I was devastated.
My baby girl had three abnormalities...

I spent my pregnancy taking pictures of my belly, talking to her, journalling, and preparing my hospital bag to
ensure I had supplies to do memory making crafts and activities with her. My mom bought her a lovely baptismal
gown, I bought a pink dress, I had blankets for her, a teddy bear made for her, etc.

Before I knew it, it was Halloween. I painted my belly to go with my costume and was handing out candy to
the trick-or-treaters. I couldn't help but notice I was having contractions. They were becoming more frequent
and I couldn't really keep track of them. I was teary-eyed that night because I knew Kassidy would never get
to trick-or-treat.

I woke up November 1st with an awful pain in my back. I bounced on an exercise ball but got little relief.
I began to vomit from the pain, and the contractions continued. My husband came home from work and we went
into the hospital. We found out that I was 1 cm dilated, but I was only 33 weeks and 5 days along. The nurses
said they wouldn't stop me from laboring because of my baby's condition (typically before 37 weeks they would
stop it). I went home that afternoon since I needed to be 4cm dilated to be admitted. On November 2nd, I was
admitted because I was leaking amniotic fluid. I wasn't dilated anymore, probably since Kassidy's head was too
small to exert enough pressure on my cervix for dilation. The nurses did a few ultrasounds, each time finding
Kassidy's heartbeat and then measuring the size of the omphalocele. Turns out, I would be able to attempt a
vaginal delivery. The hospital's ethics committee wouldn't let the nurses induce me until I was 34 weeks along,
which was November 4th.

Time flew by, and as the clock ticked over to bring on the morning of November 5th, I knew it would be her
birthday. They checked for a heartbeat, found it beating away at 135, and told me it was time to push. I
began pushing at 2:20pm, and Kassidy was born at 4:16pm. I saw when the doctor held her, and saw that Kassidy
was a little purple. "Is she breathing?" I asked. No one answered.

She was stillborn, but absolutely beautiful. She had passed away sometime while I was pushing.

Her blue eyes were wide open. She had my nose and lips, as well as my husband's hands and feet. Two of her fingers
were crossed (which we learned was common in anencephaly babies) and both hands clenched together. With a hat
on, she looked like a baby with a normal skull.

I have never felt so much happiness and sadness at the same time. We baptized her and dressed her in a
white satin dress. Every hat and dress we had was too big. Kassidy was 2 lbs, 11 ounces and 12 Ż inches
long. Our little doll. I recall sitting there, holding her, and praying "Thank you God, Thank you for Kassidy."

A photographer came in and took photos of our precious memories with her. Family and friends visited,
as well as our priest. I knew everything happened just how it was supposed to. Once the room cleared
of our visitors (at about 11pm), I wrapped her up in a blanket, hugged her against me with my left arm,
and fell asleep for 5 hours straight. I've hadn't slept that well since diagnosis day. It was as if I
felt relieved that she was home with God, where she was meant to be all along.

I awoke to my delivery doctor returning to check on us. We had bereavement workers come, we called the
funeral home to arrange her pick up and packed our belongings up. The hardest thing was leaving her
there, leaving empty handed.

Kassidy's funeral was on November 10th. We got to see her one last time and add a few personal items
in her casket. She was just as beautiful on the day of her funeral as the day she was born. Peaceful
and proof of His love.

Mommy and Daddy love you sweet daughter!

Looking back, carrying to term was one of the best decisions I have ever made. I would do it again
in a heartbeat. My husband and I participated in a Duke University Study that focused on the Psychological
Impact of Carrying to Term. Over the past few years, I have also met with 2 other anencephalic mothers
in the Phoenix, AZ area. I email and reach out to women who receive this diagnosis regularly. If I can
help you, please email me

Update:
Stevie and Kelsey now have three healthy children named Steven, Beau and Paige.